San Diego-Rady

I meant to post a blog once we got here yesterday, but the trip did not go as planned. For those that follow me on Facebook personally already know what happened, for everyone else, let me catch you up.

Yesterday we left at 10:30 am, I left the other pieces of my heart behind with the remainder of my children, my sister and her husband who is living with us, my nieces and nephew, and my husband. Lily and I started by going to breakfast, which went smoothly. I Should mention at this time that we rented a rental car, as not to put the wear and tear on my vehicle.

We got onto the road and were off, Lily's dad was about an hour and a half behind us, and it truly was a good thing he was. All of a sudden the car started flashing low oil pressure, so I pulled over, we called the rental company and they checked via onstar and everything looked fine, it was just a bad sensor, so we kept going. A few miles down the road, we stopped so Lily could go to the restroom, we came back out to restart the car, and wouldn't you know it, it wouldn't start. Not only wouldn't it start, it was so dead, it locked the key into the ignition. I called my husband, because I was so frustrated, I was afraid I would blow up if I called them. The company ended up bringing us another car, but it took them an hour and a half. By that time, Lily's dad had caught up to us, and had started to give the battery some go juice, and they rental company used a second battery pack to boost the power to jump it. All this time in the heat, (the gas station only had a swamp cooler) had wiped Lily out.

Once we were in the new car, she passed out for a bit, which she totally earned. She never complained, but you could see how hard her heart was working, because I could see the veins throbbing in her neck. The rest of the drive into San Diego was uneventful. We truly enjoyed watching the temperature drop, leaving from the 100+ temps, and arriving to low 70's, was glorious. 

When we first arrived in San Diego

She is starting to look older and older to me. Being able to talk with her more and more about what she is about to go through, makes me realize how grown up she is becoming. Although still a child, she is becoming such a beautiful young lady, and with this surgery, we can watch her become a beautiful woman.

Lily and Dad at RMH San Diego

Lily and Mom at RMH San Deigo

Lily and Daddy snuggles before surgery consult

Lily waiting for lab draws

At the Rady's Children's Heart Center made out of Legos

This was on the board in the surgery consult room waiting for us. I may not be a McLaughlin anymore, but the sentiment was still the same.

 Ok, so there is a story behind this picture. While we were waiting to see Dr. Nigro, Lily picked up this book, and it was pictures with story of heart children. She was just flipping through it, not reading their stories, and came across this photo. She stopped and studied it then looked at me. The words that came out of her mouth next made me almost cry. "Mommy, I'm the one that is sitting out, while my brothers and sister jump behind me. But here soon, that will be me." I swallowed a lump in my throat and kissed her head and said told her yes she will. 

Today during consult we learned that we have to have a cath tomorrow to help balloon the arch in her heart, that the narrowing is not what they want to see. If the ballooning doesn't help, then they will try something different in the OR but it will add length to the surgery. I also felt kind of defeated but it also reaffirmed the choice of coming here, when we were told that her new valve is leaking around it, and blood is once again spilling into the wrong chambers. Several different approaches to surgery were given to us, if the straight forward procedure doesn't work. I will let you know which one is gone with, after surgery is done on Thursday. 

Until then, I am going to go enjoy a little bit of time with my girl before she is checked into the hospital this evening, because her INR fell to fast, and we have to start heparin injections. Thank you to all for your continued thoughts and prayers. I will update tomorrow after cath.

Dreams are not premonitions

Have you ever been so scared, you stop crying from fear, and your next reaction is anger? I keep bouncing between the 2 at this moment. Between utter fear and and raging anger. I had a dream the other night, that it was Lily's surgery day, and she is begging me not to let them put her under. Tears are pouring down her face. She looked at me and said, "Mommy, if they put me to sleep, I will never wake up." I stroked her head and kissed her, while she fell asleep. Shortly into her surgery, I was paged, and was then told, she passed away. She was right. she never woke up. I woke up crying, I know it was just a dream, I know it wasn't real, but it felt so real. 

That is how it feels, daily, I live with the constant fear in the back of my mind, that Lily's heart could stop at anytime. Yet I try to block it out, live each day as a blessing, and thank the Lord for another day with my girl, and of course all my children. I have good days and I have bad days. I try so hard to compartmentalize, so I don't constantly feel on edge, but with this being our 6th surgery, I am so scared. So very scared. So I spend a lot of time on my knees, asking to borrow strength and help with peace of mind. We have 5 weeks and 3 days until we leave to San Diego, and with each passing week, as it creeps closer to us leaving, my brave face is starting to falter. I keep staring at her beautiful little face and memorizing every detail of her, because as much as I know that dream was not real, it still sits in the back of my mind, and has rattled me to the core.

Decision Day- New Beginnings

I have started this blog so many times and have stopped it because I have been angry about it all. Those who don't follow me on Facebook, let me update you. 3 days post-opt, we found a new hole in Lily's heart. It was close to the other one, so we thought it might have just been the stitching came a little undone in that area. Well fast forward from October to April. The mummer we started with has gotten louder and much larger.

Dr.Rhee ordered us to do a CT dye scan, so we could get a better look at her heart and hopefully build  3D model of her heart. We succeed in doing so, but the answers we were looking forward was not a straight forward answer like we were hoping for. The hole in her heart is in the right ventricle and right next to her Onyx valve. The 2 different trials plugs and patches they tried at PCH wouldn't work. One would complete block the flow of the valve. which would kill her. The other one, we would run the risk of it causing a stroke. 

So we reached out to Boston. CHOP, and Rady (SD). Boston suggest coils, which do not work for Lily. She seems to throw them. CHOP suggest a plug for a fix for now, but knows she will need surgery down the line. Rady seemed to be the only one who gave us something to think about. 

Dr. Nigro suggested the Ross procedure, which is where they take the aortic valve and replace it with the pulmonary valve. Then the pulmonary side is replaced with a cadaver valve. What would this mean for Lily? It would be life altering! She would no longer have the mechanical valve, which is the reason she is on the blood thinners. She would be able to play like a normal child. She would be able to have children without the complication of blood thinners, because there are many. If the cadaver valve was to fail, at that point, we would be able to use what is called a Melody or Sapien valve, which would not require blood thinners. They would be able to place the via cath.

As much as we don't want to do another surgery, this hole has happened twice already. The area has deteriorated from the multiple surgeries, the patches we have put on it, have not worked because the area is to thin. This surgery would reinforce the wall between the right and left ventricles. It is a pretty drastic surgery but the best option in the long run. This decision wasn't made lightly but it was made wisely. 

Now, here comes the big part. Could this be done here in AZ at Phoenix Children's Hospital, by Dr. V? Yes it could be. Our preference would be Rady San Diego, Dr. N, because he has done 4 previous surgeries with Dr. C. He was the one who suggested this. I feel that he is the one who understands her heart best. If a surgeon here in AZ couldn't come up with this, why should I trust that he knows her heart best, when he himself has said many times over how "complicated" her heart is. So Dr. R has said he will send to Rady for clinic visit, and for a cath, and when insurance pushes back, which it will, because they will want the surgery done here in state, he will have Dr. V write a letter for the insurance as to why it needs to be Rady.

So now we wait. We wait for the call from Rady. We wait for our lives to change. We wait for Lily's life to change. We wait for our new tomorrow.

Surgery update 3

They have finally pulled Lily off bypass (the heart and lung machine). They are checking for bleeding spots. They will make sure to suture all the spots and once that is taken care of, they will start to close her up. We still have a bit of time ahead of us before she comes upstairs or we see her, but the fact that she is off bypass is wonderful news. That was something I have been praying very hard about all day.

I will update again as soon as I hear more news.